I spent the horribly long winter months wishing them away. I longed for Summer and for the freedom of being able to play outdoors. I was sick and tired of wasting thirty minutes of my day making sure coats were zipped, hats were on, gloves were secured, and boots were tied. Winter in Missoula was six long months of constant overcast and record snowfall. Thankfully Summer finally arrived, the snow melted away and the sun started to shine. Along with Summer, however, came the rude reminder of why disabilities suck.
I've refused to acknowledge my feelings of bitterness and sadness towards Cale's disability for the last year or so. It does me no good to dwell on it because the truth of the matter is that it is what it is and there is not one thing I can do to change it. I would become a miserable person if I spent each and every one of my days being sad or angry over the life I have been dealt as Cale's mom.
This morning, however, I was pushed to my breaking point.
A group of ladies, who also happen to be some of my closest and dearest girlfriends, have been meeting on Thursday mornings for the past few years as part of a bible study through our church. Cale's speech therapy has always been during the times they meet and so I have never been able to attend. This year, even though the official bible study broke for the summer, a certain group decided to meet privately at a house to keep the fellowship and spiritual growth moving. Knowing that I've never been able to come, they worked hard to change the time to accommodate me. Today was my first day.
To give you a peek into my thoughts going into something like this I think some background is appropriate. I become very anxious doing things like this for myself when I know I'll have to bring my kids along. On one side of the coin I see the need and importance of being around other Christian women who are in a similar stage of life as myself. I think fellowship is critical and having friends around to encourage and guide me is priceless. On the flip side, however, I am faced with the guilt of leaving my kids, Cale in particular, with a babysitter. I play mind games with myself that always give me an excuse of why I shouldn't go, such as "The person watching all the kids doesn't know Cale and since he can't keep up with all the other kids he is eventually going to latch onto the babysitter, she won't know what to do with him so I'll end up keeping him with me and then I won't be able to focus on the bible study so I probably shouldn't even go." I give myself every reason in the book to stay at home. Home is comfortable. Home is familiar. Home is where Cale feels most secure and safe. Home is where Cale is understood. Outside, in the real world, is unknown. Very few people understand Cale and trying to get his wants and needs across to others must be a never-ending frustrating and overwhelming road for him, not to mention for me as well.
We got to my friend's house and I immediately felt uneasy and anxious. I saw all of the other kids running around and playing, being typical kids. And then I saw the giant water slide. Cale is very familiar with this giant water slide. In fact it's one of his very favorite things to do during the summer. It's a big inflatable toy that has two adjoining slides that splash into one big pool of water. Cale loves it. The only problem is that he requires constant assistance in order for him to enjoy it. He needs help climbing up the "rock wall" and then someone to encourage him to scoot to the edge of the slide so that he can gain enough momentum to go down by himself. Oh, and then he needs someone to make sure he can sit up once he reaches the bottom so that he doesn't drown. Constant assistance. I see at least fifteen kids running around my friend's backyard and two babysitters. One babysitter is holding a baby which leaves one free babysitter. She is busy herding the other fourteen kids. The odds are not looking good for my Cale. There is no way he can play on this favorite toy if I leave him and go sit with the other moms to discuss our book study. I try and take a deep breath and convince myself to just treat him like a normal kid and put him in his swimsuit. Thankfully another mom sees me struggling and offers to help sunscreen and change Riley. Little did she know that she also distracted me enough to keep me from bursting into tears. Cale is finally dressed and lubed so I walk him over to play in the water.
I take my seat amongst the other moms which is only about fifty yards away from where the kids are playing. I try to engage in the conversation but my mind and eyes are fixated on Cale. Is he okay? Is anybody playing with him? Should I be over there helping him? I feel so guilty. The moms are going around introducing themselves and sharing a high and low point of their week. It's my turn and without hesitation I admit that my low point for this week is this very moment: watching my son unable to do something that he loves. I admit that I feel guilty for leaving him because in reality I am literally the only person there that knows how to help him and communicate with him. I see him sitting at the bottom of the slides, looking up at the kids who are running circles around him and splashing water in his face as they take their turn down the slide. I want to cry and I want to leave. There is no way I am going to be able to participate in the conversation or get anything out of sitting with these other moms while I watch my son struggle like this.
I eventually get up and walk over to help Cale. I spend the rest of the time playing with him and helping him to have fun. I'm realizing that perhaps doing things like this is just not possible for me right now. I'm not like all of the other moms and not both of my kids are like all of the other kids. Cale needs me in ways that other kids don't need their moms.
Disabilities suck, especially during the summer. Activities like going to the park, taking a late-night trip to get ice cream, eating a popsicle on a hot day, or running through a sprinkler are not things that Cale can easily participate in. Cale's never even been able to enjoy a popsicle.
Disabilities just suck.
